Is it worth seeing an ME/CFS specialist?

Anyway, I will look into methylation treatment see how that works out for me.

Click to expand...

If you are relatively early in the illness (<5 years) you should seriously look into seeing an ME/CFS specialist. The first few years seem to be the magic window for treatment. If you get aggressive treatment during that period you have the best chance of achieving full functionality. Increasing age and longer time ill both reduce your chances.

Yes, it's expensive and difficult to see an ME/CFS specialist, especially if you have to travel. But is it any less expensive or difficult to live with ME/CFS as it gets worse and worse? Wouldn't it be better to go now while you have a job and some kind of insurance rather than wait until you can't work anymore and don't have insurance?

If you have NK cell dysfunction and high titres for CMV and EBV, you might get a local infectious diseases specialist to treat you with the strong antivirals necessary, but probably not for the long time (1-2 years) that ME/CFS patients need.

You also might get a local cardiologist or electrophysiologist to treat you for an autonomic dysfunction if you have it. They also don't know about ME/CFS, so they might not recognize or properly treat it, though.

You can try taking the ME/CFS Primer for Clinical Practitioners to your local docs with the appropriate parts highlighted (immune stuff for the immune doc, autonomic stuff for the cardio, etc). It's worth reading yourself, by the way, to learn more about ME/CFS.

Your best bet, though, is to find an ME/CFS specialist in NYC. I'd suggest Dr Enlander as one who has a broad variety of treatments available depending on your symptoms, but other people may be able to suggest more specialists in the area.

Most ME/CFS specialists only require you to see them face-to-face once or twice a year if you are from far away. The rest of the time they'll work with you via email or phone. That helps with the travel cost.

Chronic EBV and CMV are seriously bad. You do not want to mess around with them. The longer you wait, the more damage is likely to be done and the harder it will be to treat.

Yes, but what can be done for Chronic EBV and CMV? Sorry, have to chime in. Valtrex, Valcyte?? Yeah, both killed my liver. And, they don't make the viruses go away if you have a weak immune system. They can calm them down only to reignite if you stop them. And specialists don't make it better for many. Read so much on here. How many don't like Klimas? Have gotten worse with many, including Cheney?

People talk about specialists on here like they are the be all and end all. Bottom line, if they don't know what this illness is, how will they treat it? With more supplements? The methylation protocol that Enlander and Yasko are into? It can help. I know so many with CFS that have gone to specialists that are less than happy.

Redline, it's a start to look into this stuff. It's amazing to me that you can work that much. If you can work like that, you have major HOPE. That's great, but I can see why people may be questioning your diagnosis. I would get on it now. But, I am not sure I would throw money at a specialist. Enlander gave my friend the Meyer's Push and glutathione. That was his big treatment and it didn't do much. She got worse. I live on the East Coast. I am not far from Dr. Levine or Enlander, Dr. Shoemaker, and about an 8 hour drive to Cheney. All of my CFS friends around here go to these people only to become discouraged and broke. I am just warning you.

JOBS

I was in college when this thing hit me. Epstein Barr. Downhill since. I managed to go to college and work over a 10 year period. Advertising and PR. Have a 2 year degree and just one year left. I quit. I found my vocation. I have worked as a journalist, I tutored both Math and English to other college students and was paid well. I worked in radio for 4 years, I was a waitress, I worked at Pottery Barn...all of these jobs part time. Never full time.

Now I am a jewelry designer. 9 years. I own my own business allowing myself to create my own hours and get up when I want and work when I want. I have been successful. HOWEVER, now I am sicker than a dog. This has been the worst year. The pits. Work is on hiatus. I will figure it out for the fall and try and make it work.

I was just diagnosed with Celiac Disease. 24 years I have been sick. I am wondering if this has been it all along. I doubt it. I couldn't be so lucky. I have been trying to avoid gluten for years, but didn't know all that it is in and I cheated so much. Cake, pies, a cookie. Every week. I was supposed to be gluten sensitive. Not the same thing. I have been unable to digest food for years, have lack of minerals in my body. I have been constipated or the runs for years. This is a whole new learning curve. Huge. Here's hoping my new religious fanatical diet will work. EXPENSIVE.

Holy shit.

And, was just diagnosed across the board with low iGa, low iGg, and low ig everything. So, an immunologist wants me to do a treatment that could help me tremendously, but is beyond expensive. Like thousands of dollars expensive. She wants to know why my CFS specialist never ran an iGa test or anything with the iG's. Can't give her an answer.

My big question anymore is....what is CFS? What is it? Is it just a catchall for all of us? Do we really have something else like EDS or Celiac or whatever???? Why are these doctor's so freaking stupid. Why did my doctor not tell me that I had Celiac even though I had the test done 9 years ago and the Immunologist just found bloodwork that he did that shows that yes, I showed antibodies to gluten, therefore, I have Celiac. And the stool test tested positive. And guess what? This guy (the CFS doc) is a specialist. He specializes in CFS. He is part of Poesnecker's camp. The adrenal doctor. My cousin has Celiac, too.

Why? Because once you say you have CFS and you go to a specialist who treats CFS, they stop looking for other illnesses. It's all just CFS. So, is it so great to have a specialist? When I had endometriosis, "it's CFS." Tracheal Bronchitis...it's CFS. I lost my voice due to that mess up and had to go on antibiotics and steroids while my "CFS doctor" wanted me on Cats Claw and Oregano and IV therapy of minerals for $150 a pop. Aces. Interstitial Cystitis, it's just CFS. GI problems and malabsorption, you have CFS.

Redline, you have a version of CFS with a side of such and such, while someone else is in a wheelchair, or someone else can barely talk or walk. It really makes total sense, doesn't it? Nope. I am not saying you don't have CFS, I am saying you probably do...but why are we all so sick in such different ways? If I worked 50 hours a week, which would never happen, I wouldn't be able to function and I would probably die. No kidding. I would be too sick to handle that. But the diagnosis and the EBV and the CMV...many have this. Many who are walking around and are fine. And then others are sick from it. Who the hell knows. I know people who have lyme who are dying, or have ended their life and then you have others who are out and about with no problem and they have chronic lyme. They have symptoms here and there, but are okay. Bizarre. I guess it's all a matter of the immune system and which way it wants to go. Genetics.

Find a doctor who is knowledgable in CFS, but look into specialists in other areas, like the immune system. They can really delve into it without you having to spend $2,000 up front just to see them. Let's talk about Dr. Lerner who makes you come to him to hear your test results when you live 11 hours away from him. No phone call?? He won't do phone calls. Okay, your Highness. And, he, from what I hear, doesn't like input from the patient. My test results are in? Sure, no problem. Let me get my helicopter ready. It's out back. He might be able to help you Redline with your viruses. That's HIS thing. Viruses. You can borrow my helicopter. It's on the helipad outside of my apartment complex. Hee hee. It's really not funny. It's sad.

Sorry, but I am mad. Pissed at this illness and the idiots that deal with it. Or, don't deal with it. Somebody said something to me the other day that I love, "Don't forget, doctor's are just practicing physicians....they practice. That's it." ....right-o.

Lot of hard truth in what you say about CFS specialists, Misfit. We patients have to face it: there is no scientifically confirmed therapy that delivers any serious result for us. None.

So don't hand your precious pennies, time, energy, and emotional reserves over just yet, folks.

Also sadly true what some others said that a fair chunk of patients still get worse over time, no matter how well they manage their health. Certainly true in my case. Best I have been able to do is slow the decline, which is welcome and for which I am grateful, as far as it goes,... but it is hardly a satisfactory situation.

Okay, I'm a glass-half-full kinda person. I don't give up when things get tough. I'm a problem-solver by inclination and training. I understand there's no cure for ME/CFS and no established treatment. That doesn't mean it's impossible to significantly improve quality of life.

Sure, it's not easy to get good treatment for ME/CFS. There's only a handful of really good specialists, IMO. There's people who claim to be specialists, but are only dealing out their own brand of supplements or whatever. You have to hunt for (and maybe wait for) the ones who see the big picture and treat it all -- immune dysfunction, infections, sleep dysfunction, autonomic dysfunction, gut problems, and everything else.

The stupidest thing to do, IMO, is to sit around doing nothing during the 5 year magic window just because there's no cure or no perfect treatment. Life isn't perfect. Get used to it. An ME/CFS patient's best chance is to get aggressive treatment early on. Why throw away that chance because there's not a guarantee on treatment? Does it make sense to throw away that chance because it's "too hard"? That's up to the individual. I didn't get treatment early on, and I can tell you that getting increasingly more ill with ME/CFS is what's really too hard.

The cold, hard truth is that ME/CFS is not easy. It's not easy to live with. It's not easy to treat. It's not easy to afford. So what do you choose to do about it? Give up and sit around in the dark? Or get yourself as educated as you can, find the best doctor you can, and get the best treatment for yourself that's possible at this time, perfect or not.

I am not saying that he shouldn't do anything. I said he has major HOPE. I wrote that you should do something, but seeing a specialist is not one of those things you should have to do to get better. I sure didn't sit around and do nothing. But from someone like myself, who did so many of the treatments for CFS; the Valtrex, the Valcyte, amalgam removal and chlorella, buying a sauna, living in another location in the part of the country to get well for a year, chelation, glutathione pushes, Meyers pushes, mycoplasma treatment with antibiotiics which messed up my ability to go to the bathroom....I mean...really? I seriously could have the BEST house with a pool, with all that was spent and I am NO better. None. I got worse and I had the half glass full mentality until I realized; all of this treatment, all the money and traveling I have done to get better and for what? For what? These docs are guessing. That's all they are doing. "You have lead poisoning. Okay, you have too much mercury. You have mycoplasma." And I was told each time that that is why I am so sick.

Even while treating Celiac, (this is a definitive diagnosis) I am still nervous. What if it doesn't work? It is normal to feel that way, but man, I am plunging into it whole heartedly. I am doing so, because I have to and I have hope.

I totally think he should do something. I just don't think he should see a "specialist."

I am not saying that he shouldn't do anything. I said he has major HOPE. I wrote that you should do something, but seeing a specialist is not one of those things you should have to do to get better. I sure didn't sit around and do nothing. But from someone like myself, who did so many of the treatments for CFS; the Valtrex, the Valcyte, amalgam removal and chlorella, buying a sauna, living in another location in the part of the country to get well for a year, chelation, glutathione pushes, Meyers pushes, mycoplasma treatment with antibiotiics which messed up my ability to go to the bathroom....I mean...really? I seriously could have the BEST house with a pool, with all that was spent and I am NO better. None. I got worse and I had the half glass full mentality until I realized; all of this treatment, all the money and traveling I have done to get better and for what? For what? These docs are guessing. That's all they are doing. "You have lead poisoning. Okay, you have too much mercury. You have mycoplasma." And I was told each time that that is why I am so sick.

Even while treating Celiac, (this is a definitive diagnosis) I am still nervous. What if it doesn't work? It is normal to feel that way, but man, I am plunging into it whole heartedly. I am doing so, because I have to and I have hope.

I totally think he should do something. I just don't think he should see a "specialist."

Click to expand...

Last I heard, Klimas and Petersen (for example) were not advocating amalgam removal, chlorella, buying a sauna, moving to another location, chelation, glutathione pushes, or Meyers pushes. I'm suggesting that one sticks to the medical specialists at first, not alternative practitioners who have their own alternative theories to push. It sounds like you did waste a lot of money. I'm sorry to hear that.

Antivirals and antibiotics are used by responsible ME/CFS specialists when patients have the relevant infections. I'm interested in hearing your failure story with them. They do not typically cause liver or gut damage when managed properly, so your story must be interesting.

In contrast to your experience, three members of my family were treated with Valcyte and Valtrex long term. All had active HHV-6 or CMV and EBV infections. One appears cured -- 5 years off all meds for ME/CFS and living a very active life (including competitive sports) as a retiree. One is fully functional -- in graduate school in engineering, active social life, no PEM even hiking all day. One is disabled with mild-moderate ME/CFS, but continuing to improve.

None of us would be where we are without: 1) strong antivirals, 2) antibiotics, 3) Equilibrant (for enteroviruses), 4) sleep meds, 5) thyroid meds, 6) meds for autonomic dysfunction. This, and more, is what you can get from the real, medical ME/CFS specialists. THAT is aggressive treatment.

Fiddling around with alternative therapies is fine if you have the money and the alternative therapy is making you feel better. I prefer to stick to doctors with a more scientific basis for their treatments and use alternatives in cases where my medical ME/CFS suggests them, they are not expensive and are clearly helping with some symptom.

I suspect, Misfit Toy, that your definition of a "specialist" and mine are quite different.

Last I heard, Klimas and Petersen (for example) were not advocating amalgam removal, chlorella, buying a sauna, moving to another location, chelation, glutathione pushes, or Meyers pushes. I'm suggesting that one sticks to the medical specialists at first, not alternative practitioners who have their own alternative theories to push. It sounds like you did waste a lot of money. I'm sorry to hear that.

Antivirals and antibiotics are used by responsible ME/CFS specialists when patients have the relevant infections. I'm interested in hearing your failure story with them. They do not typically cause liver or gut damage when managed properly, so your story must be interesting.

In contrast to your experience, three members of my family were treated with Valcyte and Valtrex long term. All had active HHV-6 or CMV and EBV infections. One appears cured -- 5 years off all meds for ME/CFS and living a very active life (including competitive sports) as a retiree. One is fully functional -- in graduate school in engineering, active social life, no PEM even hiking all day. One is disabled with mild-moderate ME/CFS, but continuing to improve.

None of us would be where we are without: 1) strong antivirals, 2) antibiotics, 3) Equilibrant (for enteroviruses), 4) sleep meds, 5) thyroid meds, 6) meds for autonomic dysfunction. This, and more, is what you can get from the real, medical ME/CFS specialists. THAT is aggressive treatment.

Fiddling around with alternative therapies is fine if you have the money and the alternative therapy is making you feel better. I prefer to stick to doctors with a more scientific basis for their treatments and use alternatives in cases where my medical ME/CFS suggests them, they are not expensive and are clearly helping with some symptom.

I suspect, Misfit Toy, they your definition of a "specialist" and mine are quite different.

Click to expand...

Soc, I am allowed to have an opinion other than yours. Does Cheney qualify as a specialist? I think so. He was the one who said my amalgams needed to be removed. Also, he advocated lead poisoning treatment and glutathione. All alternative treatments. I AM talking of a specialist. Dr. Cheney. And, Enlander, who you recommended, does the methylation protocol. He is doing a study on it. Is that not alternative? He advocated Meyer's pushes and glutathione-also alternative. Supplements, Meyer's pushes, Whey protein, glutathione are alternative treatments. These docs don't do meds like you think. They use alternative treatments. Cheney wanted me to give myself shots of Heparin in my stomach.

I agree about taking care of sleep and all that you mentioned like antivirals, but many don't respond even with that. Look how many people still can't sleep on here even though they take enough meds to put out a horse.

Again, allowed to have a difference of opinion. I respect your opinion, but I have my own due to seeing a "specialist."

Sure, you're allowed to have an opinion. No one is trying to stop you having or expressing your opinion. So what's the problem? You just don't like me disagreeing with your opinion?

Does Cheney qualify as a specialist? I think so. He was the one who said my amalgams needed to be removed. Also, he advocated lead poisoning treatment and glutathione. All alternative treatments. I AM talking of a specialist. Dr. Cheney. And, Enlander, who you recommended, does the methylation protocol. He is doing a study on it. Is that not alternative? He advocated Meyer's pushes and glutathione-also alternative. Supplements, Meyer's pushes, Whey protein, glutathione are alternative treatments. These docs don't do meds like you think. They use alternative treatments. Cheney wanted me to give myself shots of Heparin in my stomach.

Click to expand...

Frankly, Cheney is not on my list of top specialists. He isn't up on the latest research as far as I can tell. He goes way off into la-la land with alternative treatments and doesn't use much of the main-line medical treatments that are currently helping patients. And he's way more expensive that other ME/CFS specialists for no discernible reason. I would never go to him, although I understand there are some people his treatments have helped. While he may have been a good doc back in the day, he looks far more like a snake-oil peddler to me these days.

Yes, Dr Enlander is doing a study on methylation. Does he prescribe it for everyone regardless of their tests and symptoms? Does he use established medical treatments for symptoms for which such treatments exist? Does he use antivirals, antibiotics, sleep meds, thyroid meds, autonomic meds? I think so. Tell me if I'm wrong. Does he have access to cutting edge experimental meds like Ampligen and Rituximab? Not all patients want to take part in experimental medicine, but for those who do, that would be a plus.

I didn't say all alternative treatments are useless. What I said was, "I prefer to stick to doctors with a more scientific basis for their treatments and use alternatives in cases where my medical ME/CFS specialist suggests them, they are not expensive and are clearly helping with some symptom". I don't have a problem with medical doctors who use supplements (including vitamins and things like glutathione) in addition to medications, especially when their use is well-researched and not inordinately expensive.

I agree about taking care of sleep and all that you mentioned like antivirals, but many don't respond even with that. Look how many people still can't sleep on here even though they take enough meds to put out a horse.

Click to expand...

And look at how many on here can sleep with appropriate meds. We have a difference of perspective.

Again, allowed to have a difference of opinion. I respect your opinion, but I have my own due to seeing a "specialist."

Click to expand...

These docs don't do meds like you think. They use alternative treatments.

Click to expand...

There are a lot more specialists than Cheney and most do not have the same treatment plan Cheney does. They do use meds like I think. Some also use supplements to, well, supplement their medical treatment plan when necessary. They aren't telling you to take out your fillings, or move to a different location, or buy a sauna, or any other ridiculous expensive alternative therapy.

I've seen three different specialists at different stages in my illness. Some were better at certain things than others. All of them prescribed established medicines, none of them recommended any expensive undocumented alternative therapy.

Discouraging patients from seeing responsible, reputable medical specialists who are using medical treatments and who are up on the current research just because you had a bad experience with a "specialist" who recommended expensive alternative treatments is irresponsible, imo. And it is just my opinion. But it is still my opinion whether you like it or not. You have your opinion. I have mine. That's all fair here at PR. Nobody says we have to agree.

I'm sorry you had a bad experience. It's clearly discouraged you from seeking appropriate care from a good ME/CFS specialist, and that's unfortunate. I had a bad experience with an anesthesiologist recently, and I'm not all that keen to undergo anesthesia again, so I can see where you're coming from. But I'm not telling people who are looking at medically necessary surgery to avoid all anesthesiologists because I had a bad one. That would be irresponsible.

I'm still interested in hearing your failure story with Valcyte, Valtrex, and antibiotics. As I said earlier, typically those meds do not cause liver or gut damage when used properly. Clearly, your case is not typical, so it would be useful to the PR membership to know what your situation was specifically that cause you to have such a terrible, non-typical reaction. It could be extremely helpful to people who have the same unusual situation you did. You might save someone in a similar situation a lot of pain and grief.

ME/CFS specialists (and in my opinion there are few who really look at the whole picture, test thoroughly and treat appropriately from test results) are able to "help" over 50% of their patients, but they fully admit that some they are not able to help. This is the way it stands at the present stage of research.

The degree of help varies according to many factors, but one big one is how long you have been sick.

If a patient is able to see such a specialist in the first few years of illness, the percentages of those helped goes way up and some are functionally "cured" or put in long-term remission--we don't know which yet. I have been sick a long time but have improved a great deal from appropriate treatment (which has not been very expensive--lab testing being the biggest financial bite).

I know others who are up to 80-90% functionality and are working full time again. This took several years of treatment but they now have much better prospects for life. And these are patients who had been sick about 10 years.

The tough issue is how very few real specialists there are, that you usually have to travel (while very unwell) to see them, and that it does cost money. It is just heartbreaking that there are so so many who are unable to take this route at all for financial reasons, or perhaps because they are bedbound and unable to travel.

But if it is a possibility (particularly for someone who has only been ill a few years) I'd sure want to see if I might be in the group that does respond to treatment.

And, was just diagnosed across the board with low iGa, low iGg, and low ig everything. So, an immunologist wants me to do a treatment that could help me tremendously, but is beyond expensive. Like thousands of dollars expensive. She wants to know why my CFS specialist never ran an iGa test or anything with the iG's. Can't give her an answer.

Click to expand...

Are you talking about IVIG?

I'd also like to know why more ME/CFS specialists aren't running IgG and IgA panels since those of us who get tested are usually at LEAST subclass deficient. I hope the study on this provides more ammunition for insurance reimbursement.

I'd also like to know why more ME/CFS specialists aren't running IgG and IgA panels since those of us who get tested are usually at LEAST subclass deficient. I hope the study on this provides more ammunition for insurance reimbursement.

Ema

Click to expand...

My new doctor just discovered that I am IgA deficient through his access to tests I had done in 2005. This was never mentioned to me at the time. It is beyond frustrating. I've just been tested for IgG and IgM but don't have results back.

Many people with chronic infections have deficiencies in either total immunoglobulins or in one of the subclasses (usually 1 or 3). I don't know which comes first, the infection or the deficiency, but it is awfully hard to fight an infection without the proper antibodies. Replacing antibodies with plasma through IVIG or SCIG can be extremely helpful. It certainly was for me. My doctor also thinks that once the infections are under control, I will be able to taper off and eventually discontinue the SCIG and still keep my IgG levels up. I hope she is right!

Misfit Toy, you are almost certainly eligible for the Hizentra patient assistance program if you are on SSDI. Get in touch with me if you need more info. It's totally free including the specialty pharmacy supplies. I personally am not sure why anyone would do traditional IVIG if they could get Hizentra. The side effects are much much less with a weekly dose vs a monthly dose. It has been a huge help for me in my fight against infections.

Ema!! Yes. She wants me to have IVIG. I have to have one more test. She hasn't told me what kind of IVIG I should have. Honestly, I just found this out. I just found out about the Celiac and now this so I am trying to learn as much as possible. I have actually been fearful of posting anything about the IVIG because I didn't want to hear bad news. The immunologist told me it would help with everything; my fatigue, my pain, my getting infections that last for months on end. I am on Social Security Disability and that is what I am scared about. I think if I have this done in the hospital, it's covered. Not sure. Have more to learn and will email you privately. It's so expensive. Holy moly!

I have read with Celiac, people also have low IgA. I have low IgA, but all of the subclasses are low, like I said. Super low.

I recommend that people with CFS look into this. Just for knowledge as to why you might have lingering infections. An immunologist got to the bottom of it for me; not a CFS specialist. WHY? I don't know. With Celiac, the symptoms for me are every time I eat, I itch and feel lousy and sometimes run to the bathroom. My stools come out looking like a pencil. Super thin from inflammation. If you are not absorbing nutrients, it could be leaky gut, but it could also be Celiac. The tried and true test is a biopsy of the small intestine. I also had bloodwork showing that I made antibodies against gluten.

I am just starting the diet. It's overwhelming. Even peanut butter has gluten in it, and gum. I am studying it like crazy and going to a support group on Saturday. I still have CFS.

Getting rid of gluten helped me a LOT. I think it's worth the bother. I don't know where you live, but do you have a trader joe's or a natural food store you can shop at? There you can find an enormous selection of gluten free foods -- including peanut butter, bread, waffles, etc. You might be surprised by how cheap and delicious.

I was diagnosis with EBV and CMV at age of 19. Since then I have been to dozens of so called doctors and they either have no clue or just think your mentally insane. They all or at least half of them will recommend antidepressant med. Fool, I am not mentally ill I have real disease causing insane amount of health issue. Every MD I been to so far thinks I am crazy for thinking CMV or EBV will cause any harm and yes that includes my infection disease doc.

The only doc that was really good at testing and treatment was my Naturopath doc. The problem is they don't usually cover insurance, require cash payment up front.

Basically, I work 50 to 60 hours a week as a restaurant manager. Let me tell you that I work my ass off. I have so many symptoms but i have no choice but to work. I know I have high titre of CMV and EBV because every time we test it comes out positive.

Basically, I just stop visiting bunch a monkey last few years. I take my usual vitamins and hop that they work. For last five years I take 10mg of Melatonin to sleep along with valerian root, every night. No exception, or else I could not sleep.

I know I have high titre of CMV and EBV because every time we test it comes out positive.

Click to expand...

Are you aware that 95+% of the US population tests positive for CMV and EBV? The important question is how high are your titres? Do you know when you had your original infections?

The reason your docs aren't concerned about the titres may be because antibodies (which is what the titres measure) can remain high for years after the original infection. They assume if your titres are high, that is the reason. Another reason, of course, is that you have an active infection.

Wellbutrin does nothing for ME/CFS that I am aware of. It can help with depression. It is often used as an add-on to other antidepressants such as Elavil.

It is generally not safe to take 5-HTP on top of a serotonin increasing antidepressant like Elavil. You can increase your serotonin too high and get serotonin syndrome. It would be wiser to increase your dose of the antidepressant.

I have mixed feelings about this. The upside in my experience is that they run all the tests
that confirm "cfs" as currently defined, neuropsychological, brain scan, bicycle, etc. And
since they know how bad our cognitive problems are they have more patience with us.

The downside for me was that since I only saw my cfs specialist once a year AND I was a wreck by the time I got to my appt AND had a flare after each appt AND my local doctors weren't interested in what he said, I didn't see any health benefits.

Also this doctor didn't explain my leaky gut, ataxia, oi, etc well enough for me to see how these actually affected me. I learned about these from the web starting in 2005. Throwing all these symptoms under
the dx of cfs interfers with understanding these and treating these individually.

I'm sure my experience would've been better if I'd lived closer and could've
seen my dr more often. Living near doctors who didn't believe cfs was real, or I was sick or just didn't want to deal with how sick I was was too overwhelming and confusing for me. My cfs started in 1990, prior to the web tho so hopefully medical treatments have improved.

Fwiw, we don't know how many specialists claiming to help their patients told them to avoid toxins or common
food intolerances. And we don't know how sick these patients they helped were.

I've met quite a few
people who regained their health from various illnesses by avoiding certain toxins and food intolerances. And I know some
who made some improvement but never totally healed. Exercise appears to be an important factor too
but that's out for many pwcs.

Cheney, Klimas, etc must be
recommending avoiding intolerances for a reason. They must be seeing that most of their patients have these. Which
means most of their patients have leaky gut. And leaky gut is only managed or treated via alternative
practioners or integrative. Btw. dr oz had a segment on leaky gut last week.

I'm sorry to hear that your celiac dx was missed so long ago. Sadly, gluten intolerance including celiac
is still being ignored by some people in the medical profession. Fwiw, this is why I became so vocal about gluten
sensitivity back in 2006. Going to my celiac support group and meeting others like you and me broke my heart.

Imho, there's no way of knowing how your body will respond to the gf diet since your dx was 9 years ago but
that doesn't mean you shouldn't be hopeful. I've yet to meet a celiac who didn't feel better gf but most
still have health concerns. Celiac is linked to a long list of autoimmune diseases.

Even if the celiac section of your intestines
heal, there can be damage in other areas of your body that may or may not heal. My ataxia vanished after 16 1/2
years one year after going gf but some people's brains heal quicker and some people don't heal at all. Theglutenfile will
give you an idea of how extensive the damage can be.

I'd recommend
eating as many nutrient dense foods, superfoods, as possible once your digestive tract heals. I seem to digest my food
best if I eat papaya, mangos and pineapple. I have to go back to using these regularly. Digestive enzymes
in capsules or pills just don't work as well.

Nutritional deficiency testing is recommended since celiacs lose out on these. We have a lab locally that
runs some of these without a presciption so you may have one of these too. My dr ordered a wider panel that showed some deficiencies I'd never have thought of.

Btw. Appr two years post gf diet, my serum test for gluten was negative but my stool test was Positive. I did these at the same time. I was told that the stool tests are more sensitive.